It is important for you to seek care as soon as you feel an MG crisis coming on to ensure proper medical intervention. If you are feeling short of breath,it is very important to call 911 or get medical help immediately.
MG Exacerbations & Crisis
Living with myasthenia gravis (MG) can be difficult at times, and it is important to be prepared for the future. Knowledge is key to understanding how to deal with a crisis or exacerbation - enabling you to be your own best advocate. An exacerbation, or flare, is when your symptoms increase in frequency and/ or become more severe. It is important to contact your doctor and tell him about any change in symptoms or issues. Your physician can intervene to ensure that the exacerbation does not become a crisis.
Complications can occur due to a wide variety of reasons and situations or treatments - causing your MG to flare and triggering an MG crisis. A crisis may occur suddenly or gradually, so you should call 911 as soon as possible.
MG Crisis vs. MG Flare
MYASTHENIC CRISIS affects a small percentage of people with MG. It occurs when the respiratory muscles get too weak to move enough air in and out of the lungs. The person with MG is unable to breathe and a machine (ventilator) is necessary to help them breathe. The machine may do this through a tube into the airway (endotracheal intubation) or a tight-fitting mask on the face (BiPAP). Myasthenic crisis involves the respiratory muscles so it is different from an MG flare (exacerbation).
MG FLARE or “exacerbation” occurs when there is worsening of some or all muscles throughout the body, but assistance is not required for breathing. MG flares vary from person to person but may include worsened double vision, slurred speech, increased arm weakness, falling, unsteady walking, and difficulty swallowing. Many muscles throughout the body may weaken during an MG exacerbation but myasthenic crisis refers specifically to severe, potentially life-threatening weakness of respiratory muscles. Myasthenic crisis typically develops after days to weeks of worsening symptoms. Rarely, MG crisis can develop more quickly. It is important to seek medical care immediately when symptoms of possible MG crisis are present.
Being Prepared Before an MG Crisis
The ability to stay ahead of the game before it becomes a crisis is crucial. You should have materials and information available BEFORE an MG crisis occurs so you or your caregiver can act fast. Keep materials or MG information close by and create a package of important information to take to your doctor or the emergency room at a hospital. You can stay prepared by compiling materials or downloads below.
Pack the Essentials – Pack a set of essentials in a backpack or carry on case with things that you need, including printouts of the downloaded materials and lists below. Include toiletries such as toothbrush and toothpaste, deodorant, comfortable clothes including underwear, a neck pillow, headphones and extra-long phone charger. Bring your treatment medicine if you can as well as a list of all medicines.
Cautionary Drugs List - Certain medications and over the counter preparations may cause worsening of MG symptoms. Remember to tell any doctor or dentist about your MG diagnosis. It is important to check with your doctor before starting any new medication including over the counter medications or preparations. DOWNLOAD the LIST of CAUTIONARY DRUGS and have it available for Emergency Medical Professionals or EMTs.
Emergency Alert Card – This helpful wallet card can be printed out and presented to medical professionals so they know you have myasthenia gravis. The card will also help EMTs and medical providers understand how to treat your MG crisis. You can DOWNLOAD the CARD to print out. This is the Spanish Language Version HERE.
List of all treatments and medicines – Type or write out a list of ALL medicines you take, including your MG treatments including dosage, unit amounts, frequency, and drug store.
Emergency Phone Numbers – Have an accessible list of phone numbers and email addresses for your caregivers, medical professionals including nurses, neurologists, and doctors, as well as your emergency contacts such as spouse, family members, and close friends. Make sure you have contact information for anyone who can help you in an emergency.
Print out MG Emergency Brochures – MGFA offers two emergency brochures for first responders and caregivers on the myasthenia.org website. Print those two brochures and have those with you in the event of an MG crisis to show EMTs and medical professionals. These guidelines could save your life. You can find them below.
Download the New MyMG Mobile App – The new mobile app enables patients and caregivers to keep track of symptoms and their severity as well as treatments. Use the app on a daily basis to track your symptoms and show the symptom and treatment graphs and history to your doctor, neurologist, or emergency professionals. You can DOWNLOAD the MyMG Mobile App in ADVANCE HERE.
MGFA Patient Packs – We offer printed packs of information that include these materials and other printed brochures. If you would like to request a hard copy printed pack, YOU CAN COMPLETE THE FORM HERE.
This is a complication of MG characterized by worsening of muscle weakness resulting in respiratory failure. This happens when the respiratory muscles get too weak to move enough air in and out of the lungs. A ventilator, which is a machine to help you breathe, is necessary in these cases. The ventilator can help you breathe through a tube in your airway (endotracheal intubation) or through a tight-fitting mask on the face (Bi-PAP).
Even if a ventilator is not yet needed, someone diagnosed with impending myasthenic crisis may be admitted to the hospital. As careful monitoring and aggressive treatment is needed to prevent full myasthenic crisis, it is important to seek medical care immediately. Almost all patients with MG crisis or impending crisis require specialized medical treatments administered in a hospital setting.
Knowing When You Need Medical Intervention
While complications of MG are treatable, some can be life threatening. Myasthenic crisis is a life-threatening condition that affects breathing and requires immediate treatment. It is important to keep in mind that regular care and treatment with your healthcare provider can help prevent flare-ups and potential crisis. Recognize signs of increasing weakness, particularly shortness of breath and difficulty with swallowing, and consult with your physician or go to the emergency room for intervention. Many people can live a full life with MG through effective management of its symptoms.
It is important for you to seek care as soon as you feel a crisis coming on to ensure proper medical intervention. If you are feeling short of breath, it is very important to call 911 or get medical help immediately.